Well, hey there, my readers – if I have any ;)
Since it is M.E awareness week next week, I thought I would blog
about my story with M.E. And tell the world a bit about what I’ve been through
the past 10 years. I want to give people, who aren’t unwell with this awful
illness, an insight to how awful it is.
I’ll try to remember as much as I can, as a lot of my
journey is a little bit hazy.
Diagnosis: So, I first got unwell when I was 7. I was unwell
with virus, after virus. Due to this, I had to go to lots of doctor’s
appointments with my Mummy. They told us that it was just a virus, and it would
get better; although things didn’t get better. After, what it seemed like
centuries, they referred us to the hospital for tests to try to get to the
bottom of what was going on. At this point, I was aged 8.
Finally, we got an appointment through in the post, and
relief flooded over us all that we would hopefully be getting to the bottom of
what was going on with me. I remember waiting in the waiting room at the
hospital, terrified. I was with my mum and dad, and they were both comforting
me, yet they were both worried too. I remember the walls were yellow, with
stickers all over them – lots of Winnie the Pooh stickers.
The doctor I saw had grey short curly hair, and he was tall,
but then most people were tall to me, I was only 8. I remember I had to have a
swab done – which I hated, I remember screaming and panicking LOTS. As well as
lots of blood tests, on the plus side from having blood tests I got a Harry
Potter pencil case set for being brave! :)
We had to wait a little while for the results, which felt
like a lifetime, with me not making any improvements. Finally we got the
results back saying I had Myalgic
Encephalomyelitis. We had no idea what this illness was, and the
name was pretty daunting – it sounds so complicated and confusing.
In between now &
then: After this point, I can’t remember much. I remember being in denial
about having M.E for a long time. Refusing to find out anything about it, and
not wanting to talk about it. I remember that I had to stop going to school
full time and only attend part time. At one point, I could only go in to school
for lunch times and had to use a wheelchair. This was hard as I was only in
Primary school, and no-one really understood. But then again, I didn’t
understand myself.
Throughout primary school, I had home tutors a few days a
week to help me with what I was missing at school. I was unable to sit my SATs
at primary school due to not being well enough.
When I started secondary school, I was able to attend year 7
and 8 part time, luckily without my wheelchair, which was fab. But because of
only being able to attend part time, I didn’t really have any friends, only a
couple. This was hard, as I would see everyone else around school with loads of
friends, when I hardly had anyone. When I was hanging out with anyone I would
feel like I was a nuisance and that I was imposing on them.
Year 9 came around and I was only about to attend school a
couple of hours a day, which was hard, but I still managed to enjoy my lessons.
When I was 13, at the end of year 8, I got with my boyfriend, Luke. So
throughout year 9, when I was able to attend break or lunch times, I would hang
about with him and his friends, without feeling like an imposter. We had loads
of fun and laughs and this really cheered me up. In year 9, despite only being
able to do a very short amount of time at school, I still managed to sit my
English Language and English Literature GCSEs two years early, getting a B in
both of them, which I was so proud of. This year, I managed to go on holiday to
Greece with my boyfriend and his family and I also managed to go to Devon with
my family and my boyfriend. These were two amazing experiences.
Half way through year 10, I had a bad relapse, due to the
pressure of GCSE coursework. It started with vertigo, and then all my symptoms
got dramatically worse. This left me unable to go to school, but I was still determined
to do my school work from home. In the summer of this year, my boyfriend, Luke
proposed to me! This was the highlight of my year.
Throughout year 11, I couldn’t attend school at all, and
when I had to go in after the school day had ended to do practical’s for
science or meet with teachers, I had to use my wheelchair and have either my fiancé
or mum come with me to help me. I missed all my lessons and had to have all the
work I was missing emailed to me by my teachers so I was able to work from
home. I did all the work from home myself, without help; apart from Maths,
which I had a tutor for. I was too poorly to go into school to sit my GCSEs, so
I had to do them at home. I was only able to take one GCSE exam which was Child
Development – my favourite subject. I was able to complete my science BTEC
coursework which was classed as another GCSE. I was meant to be doing my Maths
GCSE but after taking my Child Development GCSE I was too poorly to take it,
this meant I had to defer it for another year.
After this my health continued to get worse, and I could
only go out about once a week with my wheelchair, and I couldn’t go out on my
own or with my friends, like normal teenagers. My family were unable to go on holiday that
summer as my health was too bad, and I couldn’t manage it. Which I felt really
guilty about, although there was nothing I could do to help this, apart from
apologise, but they understood.
September of 2012 came, when I was meant to start sixth
form, but I wasn’t well enough. My mum had to call the sixth form and talk to
the head of sixth form, and I had to defer starting sixth form until September
2013. I felt like a failure but I knew my health couldn’t take the pressures of
A-Levels, or any education.
Now: Now, it is
May 2013, and I am plodding along in my own little way. I am no longer using my
wheelchair, which is FAB! I hate using my wheelchair, and I am going to try
never to go back to using it, no matter how bad I get. I am proud of myself for
getting out of my wheelchair. I manage to walk round the shops now, as long as
I have support and get to sit down half way through the outing. Outings are
usually only a couple of hours, but this is amazing, I love being able to be
out, even though they completely drain me and afterwards I need to go to bed
for a couple of hours. My symptoms have all gotten worse, and I’m still
suffering with depression, and anxiety. Luckily, my anxiety has improved a bit
which I am so glad about, as I hate it. I usually have to take a nap in the
afternoons, and sleep until 9.30-10am, because I cannot sleep until the early
hours of the morning, usually between 1-4am, depending on the severity of pain
and nausea.
My worst symptoms are pain which affects every single part
of my body, extreme constant nausea, awful stomach cramps, weakness, feeling
constantly faint, feeling shaky inside of my body and feeling fuzzy in my head.
Also, headaches, sore throats, painful glands, sore skin and back ache. That is
only some of my symptoms.
Currently, I am undergoing tests for lupus as the doctors
and my rheumatologist think that it is a possibility that I have it. I just
want to get to the bottom of this, and find out what is going on. I have had
numerous blood tests, an ultrasound and urine tests, as well as examinations.
All such fun ;)
I am currently getting very excited for my wedding, which is
on the 17th August this year. Almost all the planning has been done,
which is amazing. Can’t believe I’m getting married this year. My gorgeous
little sister is being my maid of honour, and my best friend with M.E is being
a bridesmaid, as well as my best friend from primary school who is still one of
my best friends.
Me and my fiancé, Luke have been together 4 years next month,
I can’t believe how fast this time has gone, feels like we’ve only been
together a month.
I started a college course on counselling skills which is
only 11 weeks, although I’ve only been able to manage the first week so far,
and have had to miss the last two weeks due to feeling to too unwell. Hoping I will be able to attend
next week’s lesson, fingers crossed.
Positives: Despite this awful journey with this
terrible illness, I have some positives from it. I managed to get an A in my
Child Development GCSE, despite taking it at home and through teaching myself.
And I also managed to achieve a C in Science BTEC.
Through having M.E, I met my fiancé, and if it wasn’t for
being poorly I’d never have known him and wouldn’t be with him now, and wouldn’t
be getting married in 3 months’ time. I am so glad I met him, and got with him.
I love him millions and am so lucky that he is my fiancé, he is amazing and
takes great care of me. He is my best friend. :)
I have gotten so much closer to my little sister, Phoebe,
who also has M.E. We’ve helped each other through these tough times, and have
gotten closer. We spend loads of time together, watching TV together and
cuddling. She is my best friend and she is so inspirational. I love her with
all my heart.
I’ve gotten closer to my mummy, who has been the most
AMAZING carer ever! Despite her not being well herself, she has been the best
ever. She is always there for me, always supports me. She has even had to help
me get dressed and bathed when I was at my very worst. She is so patient, and
understanding. We have amazing memories
together, and she is my role model and my idol. My Mummy is also my best
friend, who I love so much, it’s unbelievable. Thank you for everything you do
for me Mummy, and for everything you have done for me. I appreciate it so much,
even if I don’t always show it.
I’ve made my best friends, who also have M.E. . . Rachel
Hampshire, Jodie Osborne, Katie Moore, Issy Nicole, Polly Bayes, Dannie Larkin,
Alice Wright and Sophie Lynch.
I’ve gotten close to loads of other people with M.E
who are amazing and so brave. I want to thank you for always being there for
me. I also want to thank Alex Bliss,
Sarah Louise Feather, Hannah Wallace, Laura Ann Dunks, Laura Jane, Adele
Swaisland, Tori, Giorgia Nyman, Rachel Rawlings, Rosie Powlesland, Lizzy Horn, Sophie Lees, Becca
Harrington, Kate Stanforth, Jess Billage and Rachel Guard for being amazing; they are some of
my closest friends.
I want to thank my best friends who haven’t got M.E for
being there for me and for being great – Kimmy Wogan, Amber Takle-Webb, Vicky
Mills, Sarah Stuart and Shelbie Brown.
If it wasn’t for me having M.E, I never would’ve met Kelly
Fricke, who’s videos I watch on YouTube, she is so super brave and supportive.
She goes through so much, yet is always there for other people. I am blessed to
know her.
To my mum, dad, sister, fiancé, brother, nan and best friends… I want
to thank you for everything you do for me and have done for me, it means the
world to me and I can’t do enough to repay you. Thank you, I love you so much
and you are all amazing, kindhearted, selfless souls who I am so proud to know
and so blessed to have as my family. <3
Well, that’s it, that’s my story. Hope I didn’t bore you too
much, hehe. Love to you all. And sending spoons to any spoonies reading this.
S x
Saturday I saw my best friend Rachel and we watched Pitch Perfect, chatted and had presents. She spoilt me rotten which was so kind of her. Also went for a meal with my family and grandparents and uncle.